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Greetings, All!


pmrowley

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pmrowley Newbie

I've been a lurker on many Celiac forums for quite a while, and finally decided to "take the plunge" after checking out these forums for a couple of days. (You'd think I would have been more active sooner, as I've been a diagnosed Celiac for over 20 years now.)

A little history: I was bounced around from doctor to doctor when I was a kid, and underwent hundreds of tests to try to figure out why I wasn't growing, when I was supposed to be right in the middle of my pre-adolescent growth spurt. I was finally referred to the UC Med Center in San Francisco, where some experimental studies were being performed on a new diagnosis technique for celiac disease: Non-surgical intestinal biopsy. I think I was the second or third patient to undergo the procedure, and during the 8 weeks and 3 procedures during the diagnosis process, I saw a couple of evolutions of the biopsy device itself. (And was filmed for posterity during my first biopsy.)

Fortunately, I have a fairly mild case, from what I understand. On the RARE occasion that I have a contamination event, it usually results in about a day's worth of discomfort (mostly upset stomach symptoms.) Of course, as I've been on a total-exclusion diet for most of my adolescent and all of my adult life, I might have a more resilient gut at this point. ;) I just recently took the plunge and re-introduced oats into my life. I never thought I'd be so happy to have a bowl of oatmeal!

Needless to say, Can't say I have all or even many answers, but I do remember when gluten-free foods were few and far between, never mind eating at a fast-food restaurant! I'm used to having people look at me strangely when I explain my condition, but the advent of the Atkins diet has definitely made things easier in that regard. No longer do I get the crazy looks when I ask for a burger with no bun (and Protein-Style In-N-Out burgers are the BEST!) or ask for a salad, tossed in a clean bowl with no crutons. Hopefully, the day will come when Celiac is viewed in the US as something as important as a peanut allergy (and who didn't cringe when that happened, and all of the in-flight snacks on airplanes became Pretzels?!)

One thing I will mention though, to those who have tried a gluten-free diet, and are looking for a solid diagnosis for celiac disease; if you feel better being on an exclusion diet, why worry about the diagnosis? My wife, who is not celiac disease, joined me in my diet when we first started going out together. To this day, she says that she feels better and healthier on a gluten-free diet, regardless of whether she's a diagnosed Celiac or not. (Of course, she still eats the Fleming's Steak House creamed spinach, as her one concession, of which I am jealous of her to no end!)

Cheers,

-Patrick


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Canadian Karen Community Regular

Hi Patrick! Welcome to the board!! :D

There are a bunch of really great people here who are always there for support, guidance and a pat on the back when needed!

Glad to have you aboard - your expertise and experience will be an asset here!

Karen

flagbabyds Collaborator

Welcome! I know what you mean about there used to not be many gluten-free foods, I was diagnosed when I was a baby and don't remember Gluten containing foods, but I could never goanywhere without bringing my own food, but now I can. :) yes an exclusion diet is a form of diagnosis, many doctord don't believe in it but all you really want is to feel better. It is good that your wife is also feeling better on the diet. And if you want a firm diagnosis you would need to go back on gluten for 3 months which would not be fun at all :(

This is a great message board. I found it right when it started and even though I have lived with is for a very long time, I find new facts every day.

plantime Contributor

Hi Patrck! Welcome to the board! It is always good to here from long-time celiacs, the experience is invaluable. The diet itself is a scientific test, at least according to my kids' science teacher! I felt much better on the diet, so I didn't go for any further testing. I got confirmation by biopsy when the gi doc was looking for ulcers. No ulcers, but he did confirm what the diet had already told me! The only reason I can see for getting a formal diagnosis would be for young kids to get a 504 and other help at school and day care. Other than that, what we eat is entirely within our control, and that means our treatment of celiac is ours to control, too.

Come back and post often, we love making new friends!

KaitiUSA Enthusiast

Welcome to the board :D

Everyone here is great and so supportive ...come back and post sometime soon :D

  • 3 weeks later...
pmrowley Newbie

Thanks for the welcome! I've forgotten how good it feels to comiserate with fellow Celiacs. :) Reading everything is just what I needed to recharge my batteries! Every time I come off of these boards, I feel energized, and ready to fight the good fight again! ;)

Cheers,

-Patrick

Rikki Tikki Explorer

Welcome to the board Patrick. You will learn a lot of useful information here!


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    • nanny marley
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    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
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